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Juvenile DDD

Hi! I'm trying to find someone else that is in my daughters situation to talk to. She is 16 and has DDD at her L4-L5 and L5-S1. She's always in pain and nothing else has helped ( chiropractor, PT, epidural injections and lots of different meds). She has had 2 lumbar disectomies and had relief for only a short time. And now they are saying a fusion is the next step. Every physician she has seen is shocked at the MRI images for her age. I have a hard time finding any information about kids with DDD. If anyone could help or has information that would be great. Thanks so much!


  • I agree that there is a lack of literature about this. I was 16 when I found out I had DDD/ disc herniation that required surgery due to nerve compression. I'm told that mine is hereditary, my sister was 17 when she had her first back surgery as well. At the time Doctors were very surprised that a 16 year old had a spine of someone 60+ years in age. I'm sorry to hear that she has already had 2 surgeries with no relief. I did pretty well after my first surgery. I've had "flare ups" of severe back pain over the years but it would usually improve. I'm now 29 and just had my second surgery ( Discectomy, Laminotomy/Foraminotomy at levels L3-S1). If anyone finds good information on this I would like to know as well. I wish her the best of luck if you decide to go forward with the fusion. That would be the next step for me as well if my symptoms do not improve or if there is another disc herniation in the future.
    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • I was told that my daughters DDD was hereditary also. So I hope my other daughter that is 13 don't start having symptoms. She plays competitive softball almost year round. But all I can do is pray about it.
    Hopefully your symptoms don't come back and you never have to have another surgery again. You will be in my prayers. Good luck!!
  • LC84LLC84 Posts: 599
    edited 03/23/2014 - 5:56 PM
    You'll be in my payers as well. Thank you!
    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • in people younger than 18-21 seems to occur when there is heavy participation in sports activities, especially ones that involve excessive bending, twisting or contortion of the spine....gymnastics, basketball, baseball, soccer, and such.
  • My daughter has been in pain for years (now 18) but no one would believe us that she was in pain. She had an MRI when she was 16 and told she had Schmorl's nodes and degeneration of the spine but was told it didn't cause pain and pretty much dismissed. After a recent chiropractor did x-rays and said she had second degree degeneration and the spine of a 50-year-old, I got her MRI reports and read them. As a layperson, I could decipher what was seen on MRI was juvenile disc disease (radiologist called it Scheuremann's) I have left a message with her regular physician and still waiting for a response.
    Do you see a rheumatologist or an orthopedist, or other? This has been going on for years and even having an actual diagnosis, instead of just "you are too young to have these problems" I know would help her emotionally if anything. I just want to get right to the matter and a treatment plan. As others here have said there isn't much literature, so is finding a doctor aware of this disease difficult in itself?
    I did read an article on-line yesterday that said they are trying to get this disease into the differential diagnoses for physicians who see children with back pain. I assume that is why her pain has been dismissed- because it isn't well known or in the "guidelines" for physicians.
    If you have waded through this long story, I would greatly appreciate input on what others recommend in finding the right doctor. Thank you.
  • Parchibald, I am 23 with juvenile disc disease also. It was called Scheuermann's Osteochondrosis on my CT scan report. Consider taking your doctor to an orthopedic surgeon, neurosurgeon or pain specialist. These are generally the people to consult when you have a painful spine condition. Good luck.
  • I will call her doctor tomorrow to get her referred to one of those specialists. I do hope you are doing well. Perhaps mcjimjam have shared on this forum already but if you can share information about yourself- how you are treating your pain, etc.

  • I have not had surgery yet so I don't know whether this will help but I have found, since my diagnosis, that yoga seems to be the best treatment for my back pain. I hate yoga, it's the worst, but every specialist, every physical therapist I've seen have all said that that is is the best therapy there is and it seems to be very accurate.
    She's young and would probably enjoy it, too.
  • Perfect name :)

    I was wondering about yoga, good to hear that it helps. I was wondering if the different poses exacerbated the pain so I appreciate your input.
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